Walls

I wrote this poem 4 years ago and just found it again. It describes for me almost perfectly how I often feel disconnected from the world then I thought I what I was describing was depression because I had very little understanding of autism and Aspergers.

Walls are closing all around, 

They make it difficult to see, 

Sunshine does not pass them, 

Soon all there is is me. 

You pushed aside a brick, 

I began to hope for sunlight, 

Peered inside and saw me, 

But all you had was torchlight. 

Now your torch is fading, 

Our love cannot survive, 

I can never share your daylight, 

These walls are far too high. 

Walls are closing all around, 

They make me hard to see, 

Alone inside forever, 

Alone inside with me. 

Whirling Thoughts

Last night I had a panic attack. As I started to loose control I decided to quickly type how I was feeling before I was overcome, what follows is likely to be far from grammatically perfect but I thought it would be interesting to read back later.

Today I have been processing the end of a friendship.

It was a very close friendship but I was betrayed in the worst possible way and then had my aspergers diagnosis attacked. I have been trying to work out how to end it for 3 months but finally did about 10 days ago.

Today reading Pretending to be Normal by Liane Holliday I read a chapter about the difficulties aspies face making and maintaining close friendships and it set me off. I have been swinging between fighting tears and numbness all day.

Now sat here at almost 1 AM rocking and twisting my hands, refreshing my facebook feed over and over. My head feel like when you stir liquid and stop and it continues to whoosh around and my chest feels tight. This means I am likely to end up having a panic attack if i try to sleep. Or I will shutdown. My vision keeps blurring and now my stomach hurts. My face is itching and I can feel blood rushing to my cheeks, similar feeling I get after a few alcoholic drinks but I haven't been drinking.

I hate this. I wish months ago I could have let go of that friendship. I wish I wasn't so scared of confronting those who I care about and feel loyalty to. I wish that when faced with a hurtful truth I didn't have to try to understand others appalling actions. I find it almost impossible to believe someone I adore could be so cold. I also can't understand how someone could break such awful moral codes especially because I myself never would. How could someone possibly betray someone as deeply as I have been. And then attack them when they back away? People are so confusing and trying to understand them hurts my head and my heart. I wish people could just be as loyal to me as I am to them. Is that really so much to ask?

Shortly after that my laptop battery died so I decided to try to sleep. I turned the light off and held my favourite soft toy close twisting it's 'hair' between my fingers. I remember feeling adrenaline rush through my body forcing me to sit up in bed and sit cross-legged rocking. The last thing I remember is desperately trying to breathe through the rushing thoughts and trying desperately to cling to something positive, trying not to be afraid of the dark and to stay laying down I remember I was loosing the battle. 

A few hours later I woke up feeling disorientated. I was almost sat up with my quilt bunched up behind me and my legs crossed under me. I was facing my window with the curtains open. I do not remember turning myself into this position nor do I remember opening the curtains. Today my head feels very confused and almost like I cannot focus on my thoughts. I know this is not over. When I feel this way I could shutdown. When I do I feel emotionless for a day or so and just about manage to get the vital tasks done (feeding the kids etc), I will not take in anything I read or watch on the TV and will feel almost like I am in a huge bubble. Either that or I will have a series of night time panic attacks. 

Whatever happens over the next few days I know that this will not be the last time I have to process what has happened. My mind seems incapable of fully processing events where I cannot ever get full closure because I can never fully understand the actions or thoughts of others. I will relive these thoughts time and time again luckily each time the processing will be less traumatic until I finally stop hurting which can take a long time. Moving on is so difficult when  you have an over active brain.

The Love of Dogs

Also posted to Aspie Women Speak on 15th June 2014

Time and time again I read about how much of a positive influence dogs have on those on the Autistic spectrum. There are charities who train service dogs to help make life easier for autistics and their families. A quick google search will lead you to glowing reports of how these dogs can dramatically change the behaviour by reducing bolting and repetitive behaviour and having a  therapeutic calming effect. Service dogs can also make unfamiliar surrounds easier to cope with. However even a typical family dog can have a wonderful effect on the lives of an aspie like me.

Earlier this year I had to make the heartbreaking decision to have my 13.5 year old dog put to sleep. Her poor heart and lungs were failing and surgery could not improve (and in fact risked) her life. She was in a lot of pain and clearly very scared. The days leading up to and after her death I felt grief so intense I feared I would never be happy again. Beatie had come into my life when I was 14 years old. I had no friends in school and spent my lunch breaks hiding in the library. I was desperately lonely and needed a friend. She became my best friend. I remember times when I would walk into the kitchen sit on the floor and sob and she would just climb into my lap and sit with me. She never asked for anything more than love and gave it back unconditionally. She was there through a bad relationship and break up. When I moved out at 21 she came with me. She was the only one there with me when I paced the floor in labour with my first child, she was there through the sleepless nights that followed and the long nights alone while my husband was at work. She was a constant in a world that was always changing and letting me down. To lose that and her did and always will leave a hole.

The timing for losing Beatie could not have been much worse as I was just beginning my assessments for aspergers and I felt that she had understood me without having to use words, something humans just cannot do. I realised I needed dogs in my life but I couldn’t bring myself to replace her and timing was not right to get a puppy. My solution was to look into volunteering at a local animal rescue and specifically work with the dogs. I went to visit the centre and decided to work one day a week. The following week I started my first day and cannot believe how quickly the day passed. I came home caked in mud, stinking of dogs with a huge grin plastered on my face. Being around those dogs and doing my bit for them while they waited to find someone who would love them forever is just what I needed. One dog though stood out and I spent the next 5 weeks desperate to see him again and couldn’t resist saying hello and stroking his ear every time I passed him.

When I first lay eyes on Amos something connected. I couldn’t resist his puppy dog eyes and how he leaned against the bars when I stroked him. Each week I headed to him first to say hello and hated saying goodbye. Now people often say to me ‘Don’t you want to take them all home?’ I can say with certainty that I don’t I think they are all great but I don’t become attached because I feel each dog will find a family right for them. As the weeks went by I became more and more attached to him I kept saying ‘If I could take him home I would, but not sure how he would be with the kids.’ After 5 weeks my husband decided to speak  to the rescue owner about meeting Amos himself and then him meeting the girls. I went into research mode and realised lurchers made great family pets due to their laid back nature and not needing huge long walks. Amos was still young so he would also enjoy playing with the girls. Turns out I was right his meeting with the girls went better than expected and he soon moved in.

11 weeks on and he has become a wonderful companion. I have found his calm, or perhaps lazy nature very settling and enjoy him lying with me in the evening and stroking his soft fur or floppy ears. I have had some really sad days recently and he still hasn’t failed to make me smile with a goofy sleepy face, trying to navigate his lanky legs at high-speed around the garden or just by knowing I found him when we needed each other. He has brought the family together and there is far more laughter in the house. We also go out every day because we have to, before I struggled to get up at weekends and was happy to not battle my daughter (who also has ASD) to get dressed. Being out in the fresh air is great for me and I enjoy walks with just the two of us and actually enjoy talking to other dog walkers, because they just want to talk about dogs and that I can handle. The thing I most enjoy about Amos being in my life is how he shows just how much he loves me without ever having to say so. He jumps up at the window to watch me leave he even cries a little. When I come home his tail is always wagging and he jumps up to greet me. Such simple easy signs that tell me ‘I love you, I am grateful to have you in my life, please don’t leave.’ Many times in my life I have felt so unwanted and rejected and I constantly fear that other people will desert me. Dogs don’t make me feel that way at all they give a companionship that is unconditional and selfless.    

Adult Diagnosis

Also posted to Aspie Women Speak on 27th May 2014

A week ago I sat in a room with my Psychiatrist and listened to her tell me that she agrees that I fit the criteria for Aspergers Syndrome. I can’t remember much of what was said after that because all I wanted to hear were those words. I had spent months leading up to that day. From the moment I told my husband I was going to seek a diagnosis to the day I visited my GP to the day I had an assessment. I still thought I was wrong and I was somehow broken by a life of disappointment and rejection from others. Leading up to my feedback appointment my nights were filled with panic attacks and little sleep.

I was so full of panic thinking that I may be told that I am not an Aspie that I hadn’t prepared myself for being told that I am.  I thought I would feel a total wash of relief and vindication and that I would stop hating myself for all my flaws. Instead panic set in. I could only see all the mistakes I had made, all the misjudgements and all the time I had felt so totally alien to the rest of the world. I dreaded the rest of my life being just the same. I felt total despair at the sheer misery I feared lay ahead of me now that I realised I couldn’t be ‘fixed’.

One of the misconceptions of autistics is that they do not want friends and are happy alone, don’t get me wrong a lot of Aspies enjoy their own company and I do too, however that is not the same as the loneliness imposed on so many of us. The loneliness I feel when I sit in a busy room and I do not now how to join in or start a conversation, when I see others going to events I am not invited to, when others laugh and joke and I never seem to be in on the joke but worst of all the loneliness I have imposed on myself because years of rejection makes me back out of chances to make friends.  That loneliness is the thing I fear most for my future.

It is so hard to look ahead and not be afraid, yet to deal with fear I try to plan ahead. For now I have to try to live in the now and not allow my thoughts drift while I try to find where aspergers fits into my life.

Connecting two sets of dots.

   Over the last few years I have spent countless hours reading books, articles and blogs about autism. I was looking for answers as to what was going on with my daughter. In those words I found more and more reassurance that I was right. S wasn't like the kids in her class or the other kids in the park, she wasn't a bad kid and we weren't bad parents in fact nobody is to blame, her differences were hard-wired into her brain. They are part of her neurology and that will never change. After finally getting a diagnosis I began to read for a different reason. I wasn't looking for similarities that I could arm myself  with to fight those who doubted me. I was reading for clues of how to cope as a family, how to make life easier for S and the rest of us and to get a deeper understanding of my daughter. What I started to find was that a niggling thought I had often pushed aside was beginning to become more of a reality.

 
I have a very dear friend, one of many I had not met in real life but had shared so much with via social media I felt very close to. This friend had waited patiently for me to approach her when it dawned on me that S may have autism. She answered all my questions and gave me invaluable advise on my rights within my battle to get S's needs met. One day we finally got to meet and we spoke just as easily as we had online. It was that day as I stood in her kitchen that the niggly thought, the one I had pushed to the back of my mind, the truth that I was denying myself of suddenly became a realisation. We stood talking about how I struggle to hear someone talking if there is a background noise and she said to me 'That is a sensory issue, we struggle with that sort of thing.' I thought by 'we' she meant those on the spectrum (which she herself had just discovered she was). I realised that another person could see that I myself had traits. It really made me finally begin to think about me and I will always be grateful for her comment. She may not realise how much of an effect it had on me but I want to say thank you, you know who you are. 

 
Now it was time to research for me. To look for me among the words of others. It wasn't hard to find as I knew I had seen myself among the words of many adult aspies and I continued to find more and more. I finally realised why I had always felt like such and outsider, why I always failed to make and keep friends, why social occasions filled me with such dread and more importantly that I wasn't alone. At this stage it was nothing more than a thought maybe even a hope that I could begin to understand why I am so strange. 

I spoke to my husband and he told me he could see it in me as much as he could S which was a bit of a shock and set me back a little. I started to doubt my thoughts again just like I had with S only a few years earlier, I started to pick out all the things I did/didn't do which meant I had to be NT. I got all the way through school with nobody noticing I was odd (well the other kids did but not the teachers), I am all grown up with kids of my own and could pass as normal right?
 
Then something happened, something that upset me so deeply I realised just how differently I am wired. My husband finally talked me into joining a gym, well at least going for a trial. Before I could go to a gym though I needed to buy workout gear, the thought of having to do so caused me great panic. I had no idea how to dress at a gym and I was dreading how odd gym gear would feel. Off to a discount sport shop we went, as soon as I walked through the door I wanted to run back out. Clothes of all colours were hanging right to the ridiculously high ceilings greeted me. There are no aisles to wander up and down in this shop just clothes racks which appear to have no order and are haphazardly strewn around. I immediately felt disoriented and confused. When my husband lead me to the ladies clothes I flicked through the clothes trying to list what I needed and what I could afford and imagine how each item would feel. There was no way I would try anything on as by the time I had half heartedly picked some clothes I needed to find trainers...and that meant dealing with a pushy guy that wanted to try sell me more expensive shoes than the pairs I wanted to try. I finally found a pair that didn't make my feet feel strange and handed the others back. Pushy sales assistant was at it again, telling me about special soles and sports socks and I just snapped 'I just want the trainers, nothing else.' He scurried off to put them behind the till where yet another assistant tried to sell me a 'bag for life' which I bluntly turned down much to my husband's amusement. When I left my head was rushing and I wanted to scream and I was still yet to try on the clothes I had bought!! When I got home they didn't fit and my short fuse met it's end. I snapped at hubby to take it all back and use the money to get himself something because I was never going back to that shop and nor was I joining the gym! I had shouted and still felt uncontrollable emotions running through me, I ran to my bed  and hid under the blanket and as I wailed a cloudiness filled my head. I couldn't stop it or rid myself of it and it drained all of my energy. The next thing I knew I was waking up. I felt very lost and my head hurt but some of the raw emotion had settled and hubby suggested we go change the trousers and get some food. I re-entered the shop alone but this time I had one aim - find some trousers, exchange and leave and the thought of a meal I didn't have to cook got me through it. I was dazed for the rest of the day but the next day it clicked...the events had caused me to meltdown and then shut down. Something I had witnessed in S so many times and deep down knew I understood on a deeper level that just reading about it.

  My new thinking set me looking for more evidence and I stumbled across an online AQ (Autism quotient) test. I scored highly on this and I finally decided now was the time for me to get answers. I know many adults are happy to be what is referred to as self diagnosed but this would never be enough for me. After speaking to my husband and best friend I decided to visit my GP armed with my AQ score. It was very nerve racking but luckily my GP had known me all my life and knew of my history of depression and was more than happy to refer me to the adult ADHD and Aspergers team. About 3 months later I went for a screening appointment. It was a very nerve racking experience and I ended up crying and shaking as soon as my psychologist spoke to me but by the end I felt much better. I had enough indicators to warrant a full assessment and was told when that would be, how long it would be and was sent some more forms to fill in in the meantime.
I have my assessment in just over 3 weeks and I waiver sometimes and have moments of doubt but I will be happy when it is over and am hopeful for some answers. I have written some things down that I may not remember during a face to face appointment and am trying to stay optimistic that yet again my gut feeling will be right.

Hurt Pride

S travels by taxi to school. It was something I really struggled with but seeing how much the journey settles her and how amazing her relationship with her chaperone is those worries are long gone. S has the same driver each day and so far no issues. However sometimes she has to have a substitute driver. S is always pre-warned and still has her regular chaperone. Friday was one of these days S was to be bought home by a different driver (we'll call him Cabbie).

S came home and as soon as she stepped through the door she started crying. She told me how Cabbie had told her dinosaurs never existed. This statement to S was devastating. Dinosaurs mean more to S than most could ever imagine so to have a grown man tell her they were never alive it broke her heart. It would have caused a deep confusion as S believes what she is told especially by adults. So how can someone say they didn't exist when there are so many books and facts about? How is it possible that palaeontologists dig up fossils if they didn't exist? After we managed to calm S and reassure her that this man was wrong we started to find out what had happened. 

S had asked Cabbie some dinosaur facts things like 'What does triceratops mean?' I can only assume this clever little girl made Mr Cabbie feel a little dumb so as an attempt to recover his damaged pride he said they never lived. S started to argue and despite her chaperone telling her not to listen to him, this man that called her a 'nasty little girl', really got to her. 

We made a complaint right away to the taxi company and were assure the manager would speak to Cabbie. If this man cannot get along with children he certainly should not be assigned to the school runs of sensitive special needs children. He would not have spoken to a child that way if their parents were present. I sinerly hope he is never sent to transport my daughter again because I will not be allowing him to do so. 

We have tried to use this experience to teach S that grown ups are not always right and that if one does upset her and she tells us we will try to sort it out. 

Diagnosis, statements and finding the right school

     I have tried many times since the summer to blog about S's progress but have found it too painful to put it in words. Luckily things seem settled and positive right now so this is the perfect time to reflect on how far we have come in the last 7 months.

   
    In early June we were given a statement for S and we needed to pick a provision. We chose a school we thought could meet her behavioural needs (given that she didn't have a diagnosis). A few weeks later as we were due to sit down with her Psychologist and the deadline for the schools response had passed I chased the LEA. We were told the school could not make a decision without knowing if S had an ASD or not. Luckily we did not have to wait long as 2 days later we were told officially that S has Atypical Autism. We explained the situation to psychologist and the very next day we collected the report (almost a miracle for the NHS) and handed a copy to the LEA whom forwarded it to the school. Again we had to chase to discover that because the statement was amended the school could have a further 15 working days to reconsider. After some digging we realised the new diagnosis would mean the school would not accept S. I was sick of waiting knowing the school were just sitting on a question they knew the answer to. I tackled the matter head on and called the head teacher to get the no we knew was coming. We then named a second school which could most certainly meat S's emotional needs but we knew deep down may not challenge her academically. 2 days before the schools broke for summer we got our second rejection.

     My heart was in bits. How could so many people reject my daughter? Why could nobody educate our clever girl? I was also panicking because I knew she could not stay in the school she was in. Her self esteem was at rock bottom and the stress of back and forth to school (s had to come home for lunch) with a child who beat me and screamed while hundreds of parents and children stared at us was taking it's toll on the whole family. To add into the mix in year 2 not only would S have a new teacher to contend with but the children in the class would be different. I did not want to home school S as I found the prospect too daunting of a task and was still hopefully we would find a school.  Finally I spoke to someone at the LEA who had actually used their knowledge of local schools to try to find a suitable provision for S. I was given the name of a school about 10 miles away that may be able to meet her needs. I called full of hope and was told I would get a call back. Summer began with no reply. I had informed S's school that she would not be returning (despite being informed by the head that legislation was rather shakey as S had a statement). I didn't care I was willing to take on the LEA because it was unfair to expect S to stay in a school that could not meet her needs and cope with the huge transition into year 2 to be moved a short while later.

     We spent the whole summer in limbo we had no idea what was to come. Just before the schools re-opened we finally spoke to the potential school and arranged to go see it. It seemed right for S. She would be based in a unit within a mainstream school. Her class was made up of children with 'high functioning ' autism and she would have access to inclusion with year 2 children in mainstream. We took S to see the school and she seemed to love it.
Finally we had a place for S. On her first settling in session she read to her new teacher...something she refused to do at her former school! Her teacher was amazing with the settling in and eased my nerves about leaving S. When the day came for S to be picked up by a taxi for her first full day at school I was an emotional wreck but as the weeks and months have passed I have becoming more and more convinced that in the long run we got it right.

     S regularly comes home with prizes and certificates for her hard work and settling in so well into school. Just before Christmas I sat in a prize giving assembly and watched her new teacher and head talk about how much she has impressed them and how well she is liked by her new class. Even now I am welling with tears at how happy it made me to see her stood there looking so proud of herself.
She will soon begin to take numeracy classes with her year 2 link class and sometimes go out to play with the mainstream students her age, at her request (she told her teacher she misses girls as in her class she is the only girl). 

     It's so hard to stay optimistic as a parent as you win a battle just to be forced to begin another. All the fighting and waiting and uncertainty often brings me to my knees but I have no choice but to pull myself up and carry on. I am a mum and that is what we do for our children it is our job to help them get the best from life and if that involves a fight well then I have the greatest weapon at my side, the strength of love I have for my daughter, it's the strongest force I know.